January 30, 2010

I just gave a kid an insulin shot. Since my guys are on pumps they don't use a lot of needles They do their own sharp work when they do.

I am little dude sitting the 5 year old from up the path. He is slowly working on lunch and watching Pixar's The Incredibles with me. I love this film. It a great story about the real adventures of life.

Anyway the little dude needed his shot. He scrunched his face up but took the shot without flinching.

"That didn't hurt," he said when I finshed. I needed that. How is it that he knew to reassure me?

We are going to watch toy story 2 next. I think there is enough adventure in life without needing insulin shots or finding a babysitter who knows how to do insulin shots.

January 26, 2010

The following is a guest posts by my daughter Kelley. It is a presentation she gave at an oratorical event last year.

Exchange:She was the room’s only occupant. A luxury that served to underscore how just alone she really was. Everything had changed. She was in an American hospital room. Her family was a world away in Korea. I saw her there, quietly overwhelmed by a Juvenile Diabetes diagnosis. Eating would become a numbers game with carbohydrate counts and syringe units. A host of medical terms would be yet another language for her to learn. Needles would become routine: four shots a day, one hundred shots a month, twelve hundred shots a year. That’s not hardly normal.

Which is why my loud, larger than life parents accompanied me to hospital. I had brought them with the hope that they could help define a new kind of normal. They knew what it was to be scared and confused in the wake of a Juvenile Diabetes diagnosis. They also knew how to move forward. We had done it before. Twice. Once with my younger brother, Connor, and again a year later with my sister, Delaney. Normal for my family has come to include all the things that had seemed so foreign to her then.

Immediately, my parents began conspiring with the nurses. As far as they were concerned, a sense of normalcy isn’t possible when hospital food is involved and so they arranged for a McDonald’s Asian Salad to be brought to the hospital. It was as they helped her begin the process of rebuilding, that I saw the impact of all the small, seemingly inconsequential decisions I had made in the hours, days, weeks and even months prior.

She was a fresh face in a sea of familiar ones. A shy, quiet native of Seoul, Korea, Young-Ji was unlike most students living in the Academy’s dormitories. She came to the school with no connections. She existed outside the intricate web of relatives and long term friendships that make up the Academy’s cultural structure. She was completely unable to participate in the endless rounds of Bryn Athyn’s favorite game: “And your parents are?”

Her initial isolation was magnified by how difficult it was for her to communicate. A proficient English student in Korea, she struggled to keep up with the incoherent speed of everyday American speech. However, over time, the language barrier broke down as words and phrases became a kind of currency that we exchanged for favors and information.

She would give me Korean candy if I explained the meanings of English idioms that she couldn’t translate. I, in turn, would help with English homework only if she could teach me to properly curse someone out in Korean. When she was asked to write a phrase in Korean for extra credit on a test, I helped her work up the nerve to write something wildly inappropriate.

Language became a commodity we traded as we grew closer. Young-Ji became Jina.

She was still quiet and reserved, especially when compared to some of our more outlandish friends, but her general courteousness belied an underlying mischievousness. Jina regularly exploited others’ misconceptions about her. It was hard to suspect her of any misconduct when she tilted her head to the side and stared blankly at you. Feigning ignorance, in her sweetest Korean accent “The yogurt in my hallmate’s shampoo? Where did all my roommate’s socks go? How should I know!”

Helping her study for a religion test, I discovered she used her hand-held translator primarily to play Pong during class. In the spirit of our exchanges I offered up an explanation of Divine Providence for a turn at Pong:

“Basically, Jina, we are, in every moment, making choices. Choices with consequences. Choosing to play pong in religion class has a consequence. Providence, however, guides us. It ensures that there is value in everything we do. For example: I have to teach you the information the day before the test but now I get to play pong. So this was a valuable experience for both of us.”

In the spring, Jina, came to spend the night at my house. The visit marked the first time she had left the dorm to stay with local family. Now, my house isn’t what you might call a “starter house.” It is never quiet. There is always something going on. A dog barking. A TV blaring. A person laughing. More often than not a combination of all three. I was concerned that Jina would find all the commotion overwhelming.

I was wrong.

Immediately upon entering the house, she sat down on the kitchen floor and started happily petting the dog. She observed quietly as my younger sister came into to torment the new house guest.

Delaney never fails to make a production out of testing her blood. The sight of a third grader casually drawing blood from her own finger is unsettling for most people and she relishes in the discomfort of the uninitiated. Delaney’s mischievous tendencies are not hindered by her chronic illness. Unknowingly, she was acting as pint-sized ambassador of a new kind of normal because it was around this time that Jina began to display signs of being ill.

She was so tired that she regularly slept through classes. Despite her protests that all the greasy, American food was going to make her fat, she began to lose weight. We assumed that this was just part of adjusting to America. Surely, her symptoms were the result of the stress and exhaustion brought on by living every moment, of every day, in a foreign environment. If not that, they were certainly the result of exposure to new viruses or the lack of sleep implicit in living in a dorm.

After Delaney had finished her show and we settled in Jina mentioned she was thirsty. Really thirsty. Unquenchably so. Without thinking, I blurted out, “Have you had to go pee a lot?”

While Young-Ji had come a long way in becoming Jina, I clearly had crossed a line. Recognizing her embarrassment, I quickly backtracked. “It’s just that Delaney and Connor have Juvenile Diabetes and when they first got sick we noticed because they lost weight, drank a lot of water and used the bathroom constantly. Don’t listen to me - I’m just being paranoid. I’m sure it’s nothing.”

Only it wasn’t nothing. Jina later went to the school nurse with the suspicion that all of her symptoms added up to only one thing: Juvenile Diabetes. The nurse immediately took her to the hospital.

In the months, weeks, days and even hours prior to Jina’s hospitalization, we had made choices. Our friendship was not a matter of chance. While we were two of many people who attended the same school and shared a schedule, we had actively chosen to become more than acquaintances. We had happily become friends.

The small choices we made moment to moment, even playing Pong during religion class, had consequences. In hindsight it became clear that our trading of language and culture provided Jina with surrogate family in her time of need. We became a living example of what we recognize as providence, “[that] even the smallest moments of our lives involve a series of consequences that extend to eternity. Each moment is like a new beginning to those that follow and so with each and every one of the moments of our lives.”

A JDRF milestone payment to Osiris was just announced yesterday (Jan 25.) JDRF has been in the news a lot this month. The artificial pancreas agreements with J&J and BD have been in the news recently. They are the topic of a JDRF video tomorrow. The J&J and BD agreements are generating talk in the type 1 on line communities. To put it nicely folks are concern that these relationships be appropriate to JDRF’s mission.

Like many people I when I first heard of JDRF’s Industry Discovery &Development Partnerships (IDDP) program I was initially curious and a little concerned. I had a view of JDRF in white coated labs doing science to boldly make insulin where it had once been made before. This science would somehow make it to the local pharmacy and presto - No more T1. I wasn’t particularly realistic in that view.

Diabetes varies. So will eventual cures. So will the things that make living with type 1 less difficult along the way to those cures. Treatments and cures will need to get from the lab to the pharmacy. There is a very large and costly bridge to cross in between that is proving treatments are safe and effective. Trials.

JDRF feels that some promising discoveries in the previously mentioned white coated lab aren't making it to the market. In part this is because the process of trials is crazy expensive. It is a big risk for any business to go into trials.

JDRF’s motivation for IDDP is to help lower the cost and risk of regulatory approval and so move treatments from the lab and into our lives that may not otherwise get the investment needed for the trip.

To help these discoveries make it to the lives of people with type 1 JDRF forms development agreements with for profit firms that have promising lab discoveries. Some firms are big some are small.

There are some basic components to the agreements that we as supporters should know. The firms need to be investing as much or more in the specific project as JDRF. JDRF investments in the project are based on milestone accomplishments. That is the firm gets money from JDRF for reaching specific steps. You can see that in the Osiris announcement below. (Remember Osiris? This is a post about Osiris.)

Like making investment payments to the company, IDDP agreement also set commercialization milestones that trigger returns of invested funds from the firm to JDRF. In short the JDRF gets money back when the firm starts selling the product they partnered on. JDRF also maintains some rights to commercialize the intellectual property if the partner does not. This being Diabetes all these details vary. I am SURE JDRF say this to prospects, Your Details May Vary.

OK maybe not those exact words…

I don’t know if the J&J and BD agreements over the past few weeks fall into the same IDDP structure as the Osiris announcement that is news today. I will try to find out. In the mean time I believe that the IDDP process JDRF has developed is a responsible and practical use that deserves informed support.

Jan. 25, 2010 (Business Wire) -- Osiris Therapeutics, Inc. (NASDAQ:OSIR)today announced that it has achieved a $750,000 milestone payment from the Juvenile Diabetes Research Foundation (JDRF) for completing enrollment in a Phase II clinical trial evaluating Prochymal, an adult mesenchymal stem cell (MSC) therapy, as a treatment for patients recently diagnosed with type 1 diabetes. The milestone is the fourth in a series of payments resulting from JDRF’s partnership with Osiris for the development of a therapy for type 1 diabetes.

January 20, 2010

JDRF is in the news with another industry development agreement. This time with BD. The deal is for Micro Needle sets. See the press release with with circles and arrows and a paragraph on the back.

The idea is a better set. Better as in less painful, more rapid absorption and less set site infection, inspection and negelection. As I was looking over the 27 eight by ten glossy photographs account of the agreement (Once again my apologies to Arlo Guthrie)I was struck that this was a flash back of sorts. Like I had heard it before. Not Arlo - I love Arlo -the micro needles.

Sure enough this new release sound a lot like a 2004 press release, about micro needles. Back then Animas did a deveolpment deal with Debiotech to licence micro needle sets. The deal also included development of a 'next generation wearable micro pump.'

Regular DOC readers may rember a mention of this pump in Amy's recent State of Patch Pumping post. I went to a presentation on coming technology back in '04 and the micro needles were talked about as a key feature of the micro pump as well as groovey new sets.

I have been holding my breath since, I swear.

Just to prove how pointless a crystal ball is at predicting when diabetes stuff comes to market back in '04 these micro gems were seen as coming to market in '07.

What happened? Your guess is as good as mine. (Probably better in fact.)

The interesting thing to me isn't so much who shot Johnny Micro Needle in 04-07 but that the technology gets a second look. I can't tell you if this is a better set technology but here is the thing, it may be. YDMV.

Were I to use my guess, I may inclined to bet that the cost and special fabrication skills needed to develop the micro needle set didn't fit into the post J&J R&D budget for Animas and maybe the deal was really all about the micro pump anyway. Animas invested in developing the wireless Ping and Dexcom integration and they gotta draw a line somewhere.

So now JDRF is stepping in and helping get micro needle sets another shot at coming to market. BD is experianced at sharpened sticks and other pointy things so ya would think they can make it work if anyone can. This has the potential to improve living with type 1. (Every little but helps) I am in favor of getting interesting ideas off the proverbial shelf and into use. Given there is an appropriate mechanism to return the investment to JDRF following commercialization this is good news.

January 18, 2010

I took one for the DOC team and listened to the Dexcom presentation at the 28th Annual JP Morgan Health Conference. You don’t have to.

You are welcome.

After a fair amount of opening material for the folks who not only don’t know what Dexcom does or what diabetes is, (about 15 to 16 minutes) it got a little more interesting. That is when Terry Gregg talked about coming attractions.

PREVIEWS!

Always one of my favorites at the local Multi Plex. Here is what you can expect in this summer's block busters: Lt. Uhura is on the case and she found an open COM channel. Dex will talk to pumps, Animas and Omni pod were specifically seen in the trailer. The expectation is it will be in theaters this year (2010.) YDMV. Yeah Lt Uhura! Must be the next generation hot, smart and unimpressed buy the new Kirk, Uhura. (Wait! Wasn’t Newkirk on Hogans Heros before kissing all the ladies on that game show?)

Dexcom the next generation is coming too, where in Geordi La Forge will tweak the warp drive and they will be able to have the replicator produce more and better sensors. Also in the “Mid Term” Next Gen, faster tricorder warm up and better accuracy via more groovy math. So I guess it will also feature Charlie Eppes from NUMB3RS. Also this Mid Term starts to get more interesting as Dexcom moves the glucose engine to the transmitter. The intent is open architecture on the receiver end. Think Phones. Yes Terry mentioned the 'produce' brand names of phones (apples and berries) as likely open source receivers.

Skipping out of the entertainment news and into the business section. Animas pays out big when Dexcom get the regulatory blessing of a CE mark. $5 million. They also pay Dex $200 for every non USA pump sold with the integrated CGM. That is expected this year too. Now if I was the type to speculate without any knowledge, facts, wisdom or anything else resembling a clue, I would think J&J would be looking to buy the whole company outright at that point but that would be baseless and totally irresponsible of me.

So for families dealing looking for integrated CGM options 2010 should be a good year both in and outside the US of A.

For anyone still wondering about that blogger summit this kind of thing is the biggest outcome. We know eachother well enough to reach out fir eachothers help. That is a good thing.

Here goes:

William riosdad(at)plateautel.net wrote:Gang--

So my next project is going to be a Type-3 manual, a book for those poor people that are stuck with us T-1s and T-2s in their lives. I think I've got all the bases covered in my outline, but I'd love feedback from persons with diabetes about what they wish their loved ones knew, what they wish they would do, and what they wish theywouldn't do. I'd also like to hear from more mates and parents to get their views on what they wish someone had told them in the beginning.

Could you possibly post some sort of info request for me on your uber-blogs?

And of course I would greatly value your personal thoughts and insights as well.

are the best two I have ever read about being a partent of a T1 child. She wrote it the other way around as at T1 mom to her growing baby. Yet her words are still brilliant as the voice of The Fear deep down inside of a parent with T1 kiddos. Technology not withstanding, we still have diabetes. Diabetes is silent and does obscene things inside our heads and hearts. We pretend everything is alright, most of the time it kinda is, so we pretend away. But that bit is there raging inside of me, the part that can't take this away from my daughter. Thanks Kerri for putting word to it.

January 7, 2010

When we learn the whole carb counting thing is all about counting every little bit, reading every label and all kinds of math that seem to require a super computer. Think some dusty old British type spouting on, "Precision. That the thing. Precision." (Yes my friends at Shoot up or Put Up I am mocking y'all. I have been watching a lot of BBC and you Brits are on my mind - blame it on Top Gear.)

January 5, 2010

Gossip headlines today are talking about diabetes as a factor in the death of Casey Johnson, daughter of the owner of the NY Jets and J&J heir. Some articles mention a history of substance abuse. Most articles feature a relationship with the famously stable Tila Tequila. (Maybe I got that famous for bit wrong.) Her reported tweets put the twit in twitter.

Surprisingly one of the articles does a good job of differentiation between T1 and T2. How can a gossip bit get that and general 'journalism' can't?

YDMV. A history of substance abuse not so much vary. Substance abuse is a downhill ride.

Sadly a young woman’s life has been cut short. In her passing there will be an increase in the ‘awareness’ of the risk of living with type 1. Loosely translated that means we (and we very much includes our kids in school) will likely be hearing comments based on the headlines.

This post is a heads up to take a second to compose your thoughts and be prepared for the comments. I see it as an opportunity to talk not about passing away from complications of hard living but to look to examples where diabetes is a contributing factor to living well.

We can prep our kids to be ready to say, “That why I test, that is why I pump.”

There is no such thing as a perfect diabetic but there are lots of examples of people who make diabetes and ability not a disability. The DOC is knee deep in them.

Beyond that and maybe even instead, I encourage every parent to talk to your kids, not about diabetes but about a shared passion in life. Talk with your kids about what they love; acting, athletics, cooking, studies, reading, film, art, or in or case Top Gear.

Delaney and I are counting the days until the new Top Gear season on BBC America. It something we do together, has nothing to do with diabetes and we love it.

Quality time is where you find it. It is a contributing factor to a life well lived.